Well, not exactly alone. Me and Peanut are together, but since we count as one, inseparable, it's as good as being alone. ;-) We've shipped the eldest 3 off to the in-laws (as one friend so eloquently put it, LOL). It was a crazy week. Last Sunday, the in-laws phoned to say they can't look after the kids next week anymore, and asked if we can't bring them some other time. So we were still umming and ahing on when would be most suitable, when they phone shortly before noon on Tuesday morning from the petshop. There's baby dwarf bunnies, female, and 4 to choose from (we wanted 3, one for each child). Yay, Boeboe was jumping up in joy, eyes shining, and so so happy. And I knew, it would be torture for her to know the bunnies is at her grandma's house and here she sits, unable to cuddle and love them. I've just phoned hubby to confirm that we can go and fetch the bunnies, and while there, drop the kids off for a couple of days, when a friend phoned to say she's close to our house, can she visits. Her daughter's Boeboe's best friend even though they haven't been in the same school for 3 years now. So of course I agreed. By the time they've left, there were about 2 hours left in which I had to settle a difficult, tired baby, clean the house and pack 3 suitcases. Gosh, what a hectic day. But it turned out well. The children are settled with the in-laws and having a fantastic time. We left the bunnies there, and will collect all 6 (kids & bunnies) tomorrow. The bunnies are absolutely gorgeous. I'll post pics once they're home and we've taken some.
I'm drained. I have so much I need and want to do in the house, but I just can't muster the energy. I'm really tired. Not just physical, but emotional. Physically it's because Peanut is cutting about 3-4 teeth in one setting, and it makes her clingy and she wakes up every 1-2 hours at night for milk. Add to that the fact that I'm stupid enough to only go to bed around 1am, and now have to interrupt the 7 hours of sleep I do get at least 3-4 times, and of course you get one very tired mommy. But I can cope with that, it has never bothered me to loose sleep with a child as long as they just drink milk and go right back to sleep (it's the being awake for 3 hours in the middle of the night I can't handle!).
What I can't cope with, is the emotional stress from worrying about the children. I just wish, that for one month, I won't have all of these issues to deal with. That for one month, Boeboe would not complain about her legs being soooooo sore. Or cry and ask why is she so unlucky to have to fall and hurt herself SO much. For one month, I'd like to have NO dirty underwear to deal with. No wet, stinky clothes to wash. No dirty bathrooms. Nothing to do with poo or pee or any other form of human excrements. For one month, I wish I can just forget that my daughter had a severe birth defect, and that it has caused both of our lives to turn upside down for the rest of our lives.
And for one month, I wish I didn't have to worry about Monkeyman. That the gripping fear that is clutching at my heart will let go. That when he lies down, it would be because he has played hard and well for the day, and is laying his body down for the night to sleep. And not because he has played for an hour, and needs a rest. For one month, I wish I didn't need to see my mother in him. In those days when she was dying from heart failure. For one month, I wish I didn't need to remember how TIRED she was. How she couldn't get out of the bath on her own any more. How she couldn't sit upright anymore, at the end. Because her body was so so tired. For one month, I just want to forget again. Forget those awful days in the end. Forget how she died. How I held her hand. How she and my dad looked at each other when she closed her eyes for the last time.
Of all the things that could've happened to Monkeyman, why did it need to be this? He's such a sweet, good boy. Why did this happen to him? Sometimes I wonder what he'll remember about this time. Will it have made an impact?
We're done. We're so done. So tired of worrying about him. If things turned out like they should've, maybe we would've worried less. But he just ain't the textbook case. Just like Boeboe was never the textbook case. I guess with a wacko mom like me, they could never be textbooks, could they? :-)
It's going okay with Monkeyman, despite not being massively better after the adenoidectomy. Accordingly to MIL he's playing with Boeboe, Mr N and his cousin. She didn't notice anything funny. But when I pushed a bit, she admitted that they were playing games where he sits most of the day. Holding the bunnies, reading, drawing, playing cards, lying on the bed to watch Mr N and their cousin playing PSP, or playing with his own iPlayer, etc. So not exactly what I wanted to hear, but still better than what he was last week and weekend. So I guess he IS improving?! I'll only know for certain once he's back home and I can evaluate him.
I emailed the cardiologist last weekend, because I was so worried. Her answer was that the operation does make them lethargic for 10-14 days, so we should give it a few more days. My email was sent when it was already past the 14 days, so I don't know hey. Also, isn't the tonsillectomy the one that takes 14 days? Adenoids is a much smaller op, not true? Well, it has been 18 days now, so I'll just give it until Monday when it's 21 days. If he's not doing well, I'm taking him in. If he's okay, I'll give it another week.
What still bothers me, is little things. Like on Tuesday, while packing, I sent each child to bath and wash hair before we leave (so that MIL doesn't need to). Monkeyman played about 20 min in the bath (obviously sitting, thus resting), after which I dried him and he got dress. Once dressed, I quickly cut his sidies (the hair on the side of his face was a bit long). It only took a min or two, and he wanted to sit down. I told him no, we'll be quick, I need him to just stand still (I already had the scissors in my hands). Then I asked him to stand in front of the mirror so that I could blow his hair dry. He slumped and said he can't, he's too tired. I said well, if he really have to, he can just sit on the floor. Which he did.
That just aint normal for any 5-year old, doesn't matter what a quiet, contend little boy you have. :-( Maybe if he was being oppositional, it could've explained it, but he wasn't. I asked him if he sometimes feels less tired. He said No, he's always this tired. I asked him if he doesn't think it's getting better nowadays. He answered No, it's always the same. That made me sad. A 5-year old little boy shouldn't have to feel tired like that, all the time.
And why is he so tired? I don't get it. He's not in heart failure. His pulmonary hypertension isn't severe. It's not even moderate. And if he did indeed have sleep apnea, accordingly to the ENT he must be getting a great night's sleep now in comparison to before the operation. So why is he so tired? And why is it such a physical, draining tiredness? Just like my mom, when she was in severe, late stage heart failure. It's so worrisome!
I'm scared that he's going to push himself at the inlaws. He does that. When other people see him, he doesn't want to appear weak. So he'll keep himself going and upright. And then come home and crash. I'm praying that it won't happen. That he really is doing much better, and that once home, he'll be happy as larry and play all day long, running around outside shooting his brother and playing sword with his sister. Jumping on his little horse that he hasn't played with in months, but used to LOVE. When I once asked him why he doesn't jump on it anymore, he said it makes him tired. :-( I minimized it, told him no way, it's just all fun. But he just turned away from me.
Another little sign I'll be looking out for, is that last weekend, his dad tried to really spend some time with him. They played ball outside. Just a little while. Usually, when dad says he's done, Monkeyman would cry or beg for another few balls. This time, he just accepted it quietly and went inside. So not him. And one evening, Dad asked Monkeyman to go fetch his mini soccer table. It's one where you sit next to it, except if you put it on a table. So Dad put it on the floor and asked Monkeyman to join him. Usually, Monkeyman LOVES his soccer table. This time, they played one game, then declared he's done and went to lie on the couch. :-( That has NEVER happened before. He refused to play some more, even when Dad called Mr N to come join him. It really shocked me, that Monkeyman refused a 2nd round. So I'll be watching out for him saying no to playing games he loves.
I guess he just needs time. But why he does, I don't know. Clearly though, his body needs it. Maybe it was the low iron? Maybe now that he get supplements, it'll be much better. Who knows? We can just hope and pray. And wait. Again.
Thursday, June 27, 2013
Sunday, June 23, 2013
Not what we hoped for (yet)
It's almost 2 weeks since Monkeyman's adenoidectomy. The past week was vastly different from the first week. Since last Sunday, Father's Day, he was just about back to his old self. Huge improvement on that first week where he just lied all day long. He started playing, running around with his siblings, laughing, talking animatedly again, etc. The old Monkeyman we knew.
Unfortunately, he's nothing better than what he was before the adenoidectomy. He's okay, he's fine, but he's no better. We're still waiting for that miraculous, big improvement the doctors told us about. :-( I'm such a worrier, I can't help but wonder why we haven't seen it yet, when they were so adamant that it'll improve quickly and drastically.
About a week before the operation, I went to the shops. The mall I frequent, is rather small (as far as malls go). It's build in a crescent and a rough guestimate of its length from one side to the other, would be about 200m, maybe 250. So really not a big mall. I parked on the one side because that's where I wanted to "end" my shopping for the day (getting bread and milk). But the most important thing on my to do list was the post office on the far opposite side of the mall.
On the way to the post office, Monkeyman asked to sit down on one of the benches. Not long, just a few minutes. At the post office, he complained that he was really tired and HAD to sit down. I showed him a chair, but it was a bit far from me, so he refused. I sort of jokingly said well, then there's just the floor buddy. Lo and behold, he sat down on the floor immediately. It broke my heart. :-( As I moved up in the queue, he just moved with me, while staying in the floor. Once I was done there, he asked to sit down on the benches another 2 times on the way back to the opposite end of the mall. The last shop he did really well and we finished shopping. Probably all in all in about an hour or 2.
A few days ago, about 10 days after the operation, I had to go back to the same mall. But just at the one side of it, so no long walk or anything. I even parked close to the lift. The first shop we went to, the pharmacy, had chairs at the counter. He sat the whole time while I ordered and waited for our chronic medication for the month. I got a handful of clothes in the 2nd shop, fitted them on and paid. He had to stand/walk the whole time, nowhere to sit. The 3rd and last shop, another clothing shop, had a bench inside the fitting rooms. So he came in with me while I tried on various clothing items. And what does he do? He lied down on the bench. :-(
Then, when we went home, he hanged onto the railing in the lift, lying his head on the railing, saying he's tired. All in all, we were there for less than 90 minutes. Rest of the day, he just sat/lied down again. Really not a good day.
So it's up and down. The ups are as good as it was before the operation, the downs are as bad as it was before the operation. No improvement. Nothing.
The one thing I do think is better, is his face colour (more pinkish, not as pale?!) and the circles under his eyes aren't as dark and obvious as it was that first week after the operation. That must count for something?
We did have some (very) good news as well. His allergy tests came back all negative!!!! YAY!!! I'm so very relieved, because I know how hard it is to have a child that's allergic to something, especially food items, or medication. So either he's allergic to some very obscure thing in his diet/environment, or the ENT was very much wrong, believing that the adenoids were swollen because of an allergy. I'm not sure if this means Monkeyman was born with the enlarged adenoids, or what? I guess so. We'll find out when we see the ENT again for his checkup beginning of August.
His iron bloodtest did came back slightly low, so we're supplementing. I'm not very hopeful that it'll make much of a difference, since it never did before. And even when his iron was tested as normal a few years back, he still had this weird tiredness.
Well, there's this week's update. Not really what I'd like to have posted. But maybe, who knows, the next week will show marked improvement. Maybe his body just needs more time.
Unfortunately, he's nothing better than what he was before the adenoidectomy. He's okay, he's fine, but he's no better. We're still waiting for that miraculous, big improvement the doctors told us about. :-( I'm such a worrier, I can't help but wonder why we haven't seen it yet, when they were so adamant that it'll improve quickly and drastically.
About a week before the operation, I went to the shops. The mall I frequent, is rather small (as far as malls go). It's build in a crescent and a rough guestimate of its length from one side to the other, would be about 200m, maybe 250. So really not a big mall. I parked on the one side because that's where I wanted to "end" my shopping for the day (getting bread and milk). But the most important thing on my to do list was the post office on the far opposite side of the mall.
On the way to the post office, Monkeyman asked to sit down on one of the benches. Not long, just a few minutes. At the post office, he complained that he was really tired and HAD to sit down. I showed him a chair, but it was a bit far from me, so he refused. I sort of jokingly said well, then there's just the floor buddy. Lo and behold, he sat down on the floor immediately. It broke my heart. :-( As I moved up in the queue, he just moved with me, while staying in the floor. Once I was done there, he asked to sit down on the benches another 2 times on the way back to the opposite end of the mall. The last shop he did really well and we finished shopping. Probably all in all in about an hour or 2.
A few days ago, about 10 days after the operation, I had to go back to the same mall. But just at the one side of it, so no long walk or anything. I even parked close to the lift. The first shop we went to, the pharmacy, had chairs at the counter. He sat the whole time while I ordered and waited for our chronic medication for the month. I got a handful of clothes in the 2nd shop, fitted them on and paid. He had to stand/walk the whole time, nowhere to sit. The 3rd and last shop, another clothing shop, had a bench inside the fitting rooms. So he came in with me while I tried on various clothing items. And what does he do? He lied down on the bench. :-(
Then, when we went home, he hanged onto the railing in the lift, lying his head on the railing, saying he's tired. All in all, we were there for less than 90 minutes. Rest of the day, he just sat/lied down again. Really not a good day.
So it's up and down. The ups are as good as it was before the operation, the downs are as bad as it was before the operation. No improvement. Nothing.
The one thing I do think is better, is his face colour (more pinkish, not as pale?!) and the circles under his eyes aren't as dark and obvious as it was that first week after the operation. That must count for something?
We did have some (very) good news as well. His allergy tests came back all negative!!!! YAY!!! I'm so very relieved, because I know how hard it is to have a child that's allergic to something, especially food items, or medication. So either he's allergic to some very obscure thing in his diet/environment, or the ENT was very much wrong, believing that the adenoids were swollen because of an allergy. I'm not sure if this means Monkeyman was born with the enlarged adenoids, or what? I guess so. We'll find out when we see the ENT again for his checkup beginning of August.
His iron bloodtest did came back slightly low, so we're supplementing. I'm not very hopeful that it'll make much of a difference, since it never did before. And even when his iron was tested as normal a few years back, he still had this weird tiredness.
Well, there's this week's update. Not really what I'd like to have posted. But maybe, who knows, the next week will show marked improvement. Maybe his body just needs more time.
Saturday, June 15, 2013
What a week
I can't believe it's been a week already. Almost. Things are finally looking up. I've been quite stressed out, because Monkeyman wasn't doing as well as I thought he would. I prepared myself for a child who'll be tired and vomitting and not eating for a day (like always after anaesthesia). Then a day of having a sore throat and maybe some tears. Then a child who miraculously starts to look well, sleep well, becomes active and healthy and like a normal 5-year old little boy. Instead, I got a child that DIDN'T throw up (yay for valoid during the op!!), had extremely little throat pain and ate very well, like always, almost immediately.
And was MORE tired than usual. :-( This caught me totally off guard. I did NOT expect that. From after the operation, Monkeyman has laid down. He would sleep 12-13 hours solidly, then wake up and just lay in bed (very strange for him). Usually, he would jump up the moment he opens his eye (the reason why Mr N and Boeboe have to be sooooo quiet in the mornings when eating breakfast before school, because if they make one loud noise, Monkeyman would wake up and there's no sleeping some more with him!). This week, he would just lay in bed until long after 9am. Then he'd move his blanket and pillow to the couch in the sittingroom, and there he'd lay all day. Either playing iPad or watching tv. He'll stand up to go to the bathroom or sit up to eat. It wasn't nice to see.
By Thursday he did play once in the morning for about 30 minutes on the carpet, and again in the evening. So that gave me some hope. Friday, I went out for breakfast with friends. He was so excited, because his best friend was going with. We were there for 3 hours. He played most of the time on the carpet (pushing cars or lying down on the plastic matresses playing with the other plastic cubes). But still needed to lie down (on his seat!) twice. Like in lying down flat. Afterwards, he told me that was when he was so tired, he just felt like sleeping. And of course, he sat while eating. So all in all, probably better than the previous days, but still not really a good sign. :-( It worried me, seeing a 5-year old lying down in a place like Spur (family restaurant) metres away from an exciting play area where his best friend was running around. Rest of the day he just lied down at home again.
Then, today, he played all day long!! Sitting down, but still, he played! He moved from couch to chair to carpet, always sitting, but still playing. He played computer, iPad, Barbies with his sister, etc. I was really happy to see that. :-) So hopefully, he's at long last now on the mend. If we can now just get rid of those circles under the eyes! They're so much darker now than a week ago. And he has this veins that's prominent from the corner of his mouth down to the neck. It looks like he drew on himself with a blue pen. His jugular veins is also very pronounced, which is apparently a sign of pulmonary hypertension. So I'm worried that his heart was taking strain this week. Really scary. So I'll be so relieved when he's back to his old self. Or better yet...when that improvement the doctor spoke about, will become apparent!! He said we'll notice it immediately. :-( Well, quite the opposite happened. So sad. And so worrysome.
Tomorrow is Fathers Day, and we're visiting family. So let's hope he'll be playing around and not sitting/lying down all day.
And was MORE tired than usual. :-( This caught me totally off guard. I did NOT expect that. From after the operation, Monkeyman has laid down. He would sleep 12-13 hours solidly, then wake up and just lay in bed (very strange for him). Usually, he would jump up the moment he opens his eye (the reason why Mr N and Boeboe have to be sooooo quiet in the mornings when eating breakfast before school, because if they make one loud noise, Monkeyman would wake up and there's no sleeping some more with him!). This week, he would just lay in bed until long after 9am. Then he'd move his blanket and pillow to the couch in the sittingroom, and there he'd lay all day. Either playing iPad or watching tv. He'll stand up to go to the bathroom or sit up to eat. It wasn't nice to see.
By Thursday he did play once in the morning for about 30 minutes on the carpet, and again in the evening. So that gave me some hope. Friday, I went out for breakfast with friends. He was so excited, because his best friend was going with. We were there for 3 hours. He played most of the time on the carpet (pushing cars or lying down on the plastic matresses playing with the other plastic cubes). But still needed to lie down (on his seat!) twice. Like in lying down flat. Afterwards, he told me that was when he was so tired, he just felt like sleeping. And of course, he sat while eating. So all in all, probably better than the previous days, but still not really a good sign. :-( It worried me, seeing a 5-year old lying down in a place like Spur (family restaurant) metres away from an exciting play area where his best friend was running around. Rest of the day he just lied down at home again.
Then, today, he played all day long!! Sitting down, but still, he played! He moved from couch to chair to carpet, always sitting, but still playing. He played computer, iPad, Barbies with his sister, etc. I was really happy to see that. :-) So hopefully, he's at long last now on the mend. If we can now just get rid of those circles under the eyes! They're so much darker now than a week ago. And he has this veins that's prominent from the corner of his mouth down to the neck. It looks like he drew on himself with a blue pen. His jugular veins is also very pronounced, which is apparently a sign of pulmonary hypertension. So I'm worried that his heart was taking strain this week. Really scary. So I'll be so relieved when he's back to his old self. Or better yet...when that improvement the doctor spoke about, will become apparent!! He said we'll notice it immediately. :-( Well, quite the opposite happened. So sad. And so worrysome.
Tomorrow is Fathers Day, and we're visiting family. So let's hope he'll be playing around and not sitting/lying down all day.
Wednesday, June 12, 2013
Adenoid Operation for Sleep Apnea
There's something about being the only one in the house that's awake after midnight, don't you think? Most people seem to hate it. I find it serene. Beautiful. For some reason, this is the best time of day for me, which is why I find it difficult to go to bed before midnight. I usually end up forcing myself to switch the lights off at 1am, else I'm just too tired in the mornings.
So on Monday this week, we took Monkeyman to the hospital for his little op. I have never been as relaxed before an operation of one of the kids, as I was for this one. It wasn't his first anaesthesia. I already knew the recovery would be hard, but the op didn't freak me out. I wasn't stressed, I slept well the night before, everything just fell into place calmly without me needing to think about it much. I even forgot to let my family know the day before, that he's going in the next day. I just didn't think it a big deal at all. It was, afterall, only adenoids! A quick in-and-out thing that's one of those "have to be done things that's just an irritation" kind of things.
So we stood up early, and I gave Monkeyman some cereal since he was the eldest (yes, at 5, can you believe that?!) of all the kids on the theatre list, so he was being done last. Only around 13:30. So there was time enough for breakfast. I was actually grateful for this, because one of the hardest things on these types of days, is dragging a really tired, grumpy, HUNGRY kid out of bed, just to go and sit in hospital for hours and hours, waiting for their turn. So Monkeyman had a huge bowl of weetbix, and some juice. Then he played, while I settled little Peanut and took a quick bath myself. Such a relaxing start to the day. I even left 20 min earlier than planned! And tapped myself on the back for achieving that with the baby not being exactly easy that morning. So I left her (thank goodness, because I did contemplate taking her with!) sleeping, with the in-laws who were visiting us for a few days to help out. Monkeyman was really excited because he got to take his brandnew (overpriced!) pull-along schoolbag (with little wheels) with him. It was his "bribery" prezzie for being a brave little boy. So off we went, booked him in and started to fill out the forms once he got his bed in the children's ward.
Next moment, 3 nurses were standing around us, asking questions, demanding more detail, calling the sister in charge, bringing more bracelets, adding bright red stickers to his file, etc. I started to feel mildly uncomfortable. I mean, I've been through a child of mine having an operation at least 10x before, and this was clearly "off". About 5min later, their questions started to make sense, and I realised they were concerned about Monkeyman's heart condition. It was like being hit with a cold bucket of water in the face. I was so STUPID. How could I forget that children with heart problems are being treated with the utmost care. And for a reason!!
So I tried to shrug the mild worry off, and told myself it's not as if he has a REAL heart defect. Just an enlarged heart, not true? The one nurse came back to us and said the anaesthetyst phoned from theatre, we must go in to see her. She can't come outside to the ward because she's busy in theatre. I told the nurses that it's okay, I've written all of the info down for her, but they said she demanded to see Monkeyman in person immediately. So, off we went to the theatres, where we got to wait about 5min for her to finish up (with an emergancy trach on a baby, how sad? Baby turned out to be fine though.). She came to sit next to Monkeyman and was SO kind to him. Then she had a really good listen to his heart and gave him a quick checkup, after which she told me that his condition makes his adenoid operation a BIG deal. She said, if the adenoids are the cause of the pulmonary hypertension, it's a really big deal taking them out. She said she'd prefer it if he overnights in the hospital after the op for observation, but she'll talk to the ENT about it. She also mentioned that nobody informed her about him in time. She seemed really upset about that. And seemed to think he should've been first on the theatre list, so that they had the whole day to monitor him. I told her that he can't be pushed in earlier (it was around 11am at this point) since he had eaten at 7. So she excepted that and said they'll finish with another patient first before him then. I was kinda in shock, and didn't ask too many questions. Walking back to the ward though, it hit me like a ton of bricks, and I started crying, obviously hiding it from Monkeyman (wonderful excuse is having a cold, LOL). I just didn't expect this easy, risk-free operation to turn into a really big, scary thing so suddenly. A short while later, Monkeyman's daddy arrived, bringing lunch with for me. So I dissapeared with it (so that Monkeyman didn't need to see), and while I ate and drank something, I messaged my worries to my sister. She phoned back and within minutes she had a whole group of people praying for Monkeyman. It meant the world to me.
Around 13:30 the nurses fetched us and told us to wait just outside the theatre with Monkeyman. While there, another nurse came in from outside with some extra heart monitoring equipment, and called some more nurses to come and help out in theatre. Obviously, scaring me even more. Fortunately, Monkeyman was a real trooper. He just sat on the table while the anaesthetyst held him from behind, holding the mask over his nose to gas him. He even leaned into her. I sat in front of him, holding his hands/knees, and talking to him. It didn't even take 10 seconds for him to fall asleep.
The wait outside was obviously stressful. The ENT asked us to not go back to the rooms where the parents usually wait, but to sit just outside the theatre. Which we did gratefully. He came out about 30 min later and told us it went really well (thanks to the Lord!), but they're still busy monitoring him, because of his heart. I think his heartrate was fast. Anyway, so he said that the adenoids were exceptionally swollen. Even he was surprised at how much. He showed with his fingers, describing how there was only a slither of air going past the adenoids. More than 90% of the airway was blocked. So he cut them out. The tonsils were absolutely fine (small and not infected) and the rest of the airways were all unobstructed. He had a slightly deviated septum which was really no big deal. And his sinusses were infected (Monkeyman has been battling another cold). He flushed those and took some blood for allergy testing. He believes the adenoids overreaction was due to a longstanding allergic reaction to something in his environment or foodwise. He also said that his reflux seems to be controlled well enough on his meds (yay!!).
Poor boy was really upset when they pushed him out of recovery. Crying, kicking, throwing his body and head around with force. Nothing new, he always behaves like that when waking up from anaesthesia. So different from our sweet Boeboe who will just open her eyes and look at you with this strange, heart-plucking stare. Anyway, fortunately the anaesthetyst must've kept to her word, giving him a voltaren suppository and valoid during the op. Because after about 10min of thrashing around, he fell asleep. He woke up once or twice again, but all in all, he slept 3 hours straight. Bliss! For him and us. The dr asked us to stay in hospital until very late afternoon/early evening, so that they could check his sats. About an hour after the op, it was 89, and about 93 when we were released. His heartrate also dropped with about 30. I was actually surprised that they didn't keep him until his sats reached at least 96. But I guess they were happy that it was improving.
But, the shocks of the day wasn't done yet. The ENT explained to us that their bodies goes into a kind of shock when there's suddenly this huge influx of oxygen when they breath at night. No obstruction anymore, and this cause them to completely seize to breath. He asked us to check Monkeyman throughout the night. Fortunately, we had Peanut's angelcare breathing monitor, so we put him on that and he was just fine!! I was so so so relieved! I had enough of seeing Boeboe's seemingly lifeless, grey bluish body as a baby when she stopped breathing. I just couldn't face the thought of Monkeyman like that.
So ya, what a day it turned out to be. For such a small, seemingly innocent and risk-free operation. I'm just grateful it's over. The ENT seems to be certain that the adenoids must've caused sleep apnoa, and that must've caused the pulmonary hypertension. He's also positive that fixing the underlying cause, will revert the PH. We'll have to wait 8 weeks for a repeat eccho, but I'm cautiously optimistic, happy and so relieved!!! Oh, and he also said that Monkeyman's upperjaw will catch up with the growth that it lost out on. Yay!!!
I have so much more I want to say, but it's been a VERY long, difficult month since his PH diagnosis. And it's now long after 1am and really time for bed.
So on Monday this week, we took Monkeyman to the hospital for his little op. I have never been as relaxed before an operation of one of the kids, as I was for this one. It wasn't his first anaesthesia. I already knew the recovery would be hard, but the op didn't freak me out. I wasn't stressed, I slept well the night before, everything just fell into place calmly without me needing to think about it much. I even forgot to let my family know the day before, that he's going in the next day. I just didn't think it a big deal at all. It was, afterall, only adenoids! A quick in-and-out thing that's one of those "have to be done things that's just an irritation" kind of things.
So we stood up early, and I gave Monkeyman some cereal since he was the eldest (yes, at 5, can you believe that?!) of all the kids on the theatre list, so he was being done last. Only around 13:30. So there was time enough for breakfast. I was actually grateful for this, because one of the hardest things on these types of days, is dragging a really tired, grumpy, HUNGRY kid out of bed, just to go and sit in hospital for hours and hours, waiting for their turn. So Monkeyman had a huge bowl of weetbix, and some juice. Then he played, while I settled little Peanut and took a quick bath myself. Such a relaxing start to the day. I even left 20 min earlier than planned! And tapped myself on the back for achieving that with the baby not being exactly easy that morning. So I left her (thank goodness, because I did contemplate taking her with!) sleeping, with the in-laws who were visiting us for a few days to help out. Monkeyman was really excited because he got to take his brandnew (overpriced!) pull-along schoolbag (with little wheels) with him. It was his "bribery" prezzie for being a brave little boy. So off we went, booked him in and started to fill out the forms once he got his bed in the children's ward.
Next moment, 3 nurses were standing around us, asking questions, demanding more detail, calling the sister in charge, bringing more bracelets, adding bright red stickers to his file, etc. I started to feel mildly uncomfortable. I mean, I've been through a child of mine having an operation at least 10x before, and this was clearly "off". About 5min later, their questions started to make sense, and I realised they were concerned about Monkeyman's heart condition. It was like being hit with a cold bucket of water in the face. I was so STUPID. How could I forget that children with heart problems are being treated with the utmost care. And for a reason!!
So I tried to shrug the mild worry off, and told myself it's not as if he has a REAL heart defect. Just an enlarged heart, not true? The one nurse came back to us and said the anaesthetyst phoned from theatre, we must go in to see her. She can't come outside to the ward because she's busy in theatre. I told the nurses that it's okay, I've written all of the info down for her, but they said she demanded to see Monkeyman in person immediately. So, off we went to the theatres, where we got to wait about 5min for her to finish up (with an emergancy trach on a baby, how sad? Baby turned out to be fine though.). She came to sit next to Monkeyman and was SO kind to him. Then she had a really good listen to his heart and gave him a quick checkup, after which she told me that his condition makes his adenoid operation a BIG deal. She said, if the adenoids are the cause of the pulmonary hypertension, it's a really big deal taking them out. She said she'd prefer it if he overnights in the hospital after the op for observation, but she'll talk to the ENT about it. She also mentioned that nobody informed her about him in time. She seemed really upset about that. And seemed to think he should've been first on the theatre list, so that they had the whole day to monitor him. I told her that he can't be pushed in earlier (it was around 11am at this point) since he had eaten at 7. So she excepted that and said they'll finish with another patient first before him then. I was kinda in shock, and didn't ask too many questions. Walking back to the ward though, it hit me like a ton of bricks, and I started crying, obviously hiding it from Monkeyman (wonderful excuse is having a cold, LOL). I just didn't expect this easy, risk-free operation to turn into a really big, scary thing so suddenly. A short while later, Monkeyman's daddy arrived, bringing lunch with for me. So I dissapeared with it (so that Monkeyman didn't need to see), and while I ate and drank something, I messaged my worries to my sister. She phoned back and within minutes she had a whole group of people praying for Monkeyman. It meant the world to me.
Around 13:30 the nurses fetched us and told us to wait just outside the theatre with Monkeyman. While there, another nurse came in from outside with some extra heart monitoring equipment, and called some more nurses to come and help out in theatre. Obviously, scaring me even more. Fortunately, Monkeyman was a real trooper. He just sat on the table while the anaesthetyst held him from behind, holding the mask over his nose to gas him. He even leaned into her. I sat in front of him, holding his hands/knees, and talking to him. It didn't even take 10 seconds for him to fall asleep.
The wait outside was obviously stressful. The ENT asked us to not go back to the rooms where the parents usually wait, but to sit just outside the theatre. Which we did gratefully. He came out about 30 min later and told us it went really well (thanks to the Lord!), but they're still busy monitoring him, because of his heart. I think his heartrate was fast. Anyway, so he said that the adenoids were exceptionally swollen. Even he was surprised at how much. He showed with his fingers, describing how there was only a slither of air going past the adenoids. More than 90% of the airway was blocked. So he cut them out. The tonsils were absolutely fine (small and not infected) and the rest of the airways were all unobstructed. He had a slightly deviated septum which was really no big deal. And his sinusses were infected (Monkeyman has been battling another cold). He flushed those and took some blood for allergy testing. He believes the adenoids overreaction was due to a longstanding allergic reaction to something in his environment or foodwise. He also said that his reflux seems to be controlled well enough on his meds (yay!!).
Poor boy was really upset when they pushed him out of recovery. Crying, kicking, throwing his body and head around with force. Nothing new, he always behaves like that when waking up from anaesthesia. So different from our sweet Boeboe who will just open her eyes and look at you with this strange, heart-plucking stare. Anyway, fortunately the anaesthetyst must've kept to her word, giving him a voltaren suppository and valoid during the op. Because after about 10min of thrashing around, he fell asleep. He woke up once or twice again, but all in all, he slept 3 hours straight. Bliss! For him and us. The dr asked us to stay in hospital until very late afternoon/early evening, so that they could check his sats. About an hour after the op, it was 89, and about 93 when we were released. His heartrate also dropped with about 30. I was actually surprised that they didn't keep him until his sats reached at least 96. But I guess they were happy that it was improving.
But, the shocks of the day wasn't done yet. The ENT explained to us that their bodies goes into a kind of shock when there's suddenly this huge influx of oxygen when they breath at night. No obstruction anymore, and this cause them to completely seize to breath. He asked us to check Monkeyman throughout the night. Fortunately, we had Peanut's angelcare breathing monitor, so we put him on that and he was just fine!! I was so so so relieved! I had enough of seeing Boeboe's seemingly lifeless, grey bluish body as a baby when she stopped breathing. I just couldn't face the thought of Monkeyman like that.
So ya, what a day it turned out to be. For such a small, seemingly innocent and risk-free operation. I'm just grateful it's over. The ENT seems to be certain that the adenoids must've caused sleep apnoa, and that must've caused the pulmonary hypertension. He's also positive that fixing the underlying cause, will revert the PH. We'll have to wait 8 weeks for a repeat eccho, but I'm cautiously optimistic, happy and so relieved!!! Oh, and he also said that Monkeyman's upperjaw will catch up with the growth that it lost out on. Yay!!!
I have so much more I want to say, but it's been a VERY long, difficult month since his PH diagnosis. And it's now long after 1am and really time for bed.
Sunday, June 2, 2013
ENT results
Sorry, it was a madhouse for a few days, I couldn't update here. So yes, Monkeyman saw the ENT and as far as doctors go, I really loved this one. Such a kind, patient and knowledgable person. He's 100% sure that Monkeyman has obstructive sleep apnea! (Yay!!!) Absolutely no doubt in his mind, he doesn't even want to put Monkeyman through a sleep study because he knows it will be abnormal. I would've still loved the detail, to know how many times he stops breathing, how long at a time, how his heartrate handles it, how his saturation looks, etc. But it's not worth it putting him through that if the dr doesn't feel he needs it. Isn't it a strange feeling to be relieved about an awful diagnoses like your child stopping breathing at night? I still can't be happy about it, but I definitely am relieved!!
The doc first examined him, and immediately showed me some signs that I completely missed. The most severe the fact that if you look at Monkeyman's profile, it looks like someone punched his midface in. Aparently, the airways needs the pressure of the air to push the bone development of the face outwards. Monkeyman's airpipe between the nose and throat rarely gets that pressure, so his midface development was stunted. His lower jaw has grown past the upper, so he has an underbite already. Is't this awful? I never knew this could happen.
Second sign was his teeth!!! The doc said that it's a clear and big sign that they look for. When mouthbreathing, it damages those baby teeth. No wonder poor Monkeyman's teeth has been so bad!! I used to feel so so bad about it. As his mommy, I was responsible for his teeth. We always brushed 2-3 times a day, and he never complained about it or fought me on it. But still, I felt bad. Other people's comments on why children's teeth goes bad, didn't help much, of course.
Third sign was grannulation in the far back of the throat. It's not due to illness, it's due to a longstanding irritation like mouth breathing.
The dr also comment on the fact that his tonsils were very small, and not infected/irritated at all, and not obstructing breathing. So he was sure the adenoids were the culprit. He sent him off for an x-ray of the facial profile, and showed us afterwards. It was very, very clear. Most of the airway between his mouth and nose, is blocked by swollen adenoids. He said if it was blocked less than 50%, they take a chance on steroid medication to reduce the size, but in Monkeyman's case it's too big. So it has to be removed surgically.
We'll do that in about a week's time. Then, he said we need to wait 8 weeks for recovery, before going back to the cardiologist. If the heart eccho (sonar) shows improvement in the pulmonary hypertension, Monkeyman was one of the lucky ones and we can put this whole ordeal behind us. I think?! Because it would mean the adenoids caused sleep apnea, and the sleep apnea caused the mild pulmonary hypertension. For now, I'm going to try and not think about the "If not..." that's left unspoken. If we need to, we'll deal with it then.
There's a few strange things that I guess I'll never get answers for. Like, why didn't Monkeyman ever trigger the sleep apnea monitor? He slept on it for more than 2 years, and it's supposed to pick up apnea episodes of 15 seconds and longer. Maybe his was only about 10 seconds or so? But why would that cause such bad oxygen saturation that it caused pulmonary hypertension? Or was his pulmonary arteries compromised from the beginning? Like a weak spot that got damaged easier than normal?
Also, why didn't he ever really snore? Only when he's ill and his nose is stuffy, do I hear him snore. I don't go to bed with my children. I check on them/hear them numerous times over about a 3 hour period after they went to bed, before I do. More than enough time to know if they're snorers or not! Also, I wake up numerous times a night. I always hear my daughter snore, so if Monkeyman was a snorer, I think I would've heard him. Or if he struggled to catch his breath during his sleep.
And when did this start? His tiredness started before his first birthday. When he was still just a crawling baby, I was already complaining to friends and family that there was something wrong with this baby. The way he was physically too tired to play for long stretches. When he was diagnosed with severe iron deficiency, I thought it was that. But after 3 months of supplementation, it hadn't improved and was as much part of his personality as anything.
Why didn't the pead mention sleep apnea as a possible cause when I took him to her age 2 because of his tiredness? Maybe the pulmonary hypertension could've been prevented. :-(
I wonder what DOES cause his tiredness? Is it the lack of enough sleep? Is it the heart that works so very hard? Or is it the lack of enough oxygen at night? Or maybe a bit of each? Or different reasons at different stages in his life? So many questions, and no answers.
The ENT is going to draw blood during the operation, to tests for allergies, and do a repeat full blood count and iron test. So nice of him to not put Monkeyman through unnecessary pain! I guess the allergy tests is because we're a very allergic family, as well as because it could be the cause of the swollen adenoids. Because then of course, that cause needs to be treated.
Isn't this "funny". Allergy causing adenoids to swell, that causes sleep apnea, that causes pulmonay hypertension. My son's heart is enlarged, possibly all due to a silly allergy?!?! And he's my least allergic child!
Well, I'll be sure to update once his adenoids are taken out. Wish us luck! It's never easy to put your child through anaesthesia, doesn't matter how quick and easy the surgery apparently is. I just hope he won't be in too much pain, poor little boy.
The doc first examined him, and immediately showed me some signs that I completely missed. The most severe the fact that if you look at Monkeyman's profile, it looks like someone punched his midface in. Aparently, the airways needs the pressure of the air to push the bone development of the face outwards. Monkeyman's airpipe between the nose and throat rarely gets that pressure, so his midface development was stunted. His lower jaw has grown past the upper, so he has an underbite already. Is't this awful? I never knew this could happen.
Second sign was his teeth!!! The doc said that it's a clear and big sign that they look for. When mouthbreathing, it damages those baby teeth. No wonder poor Monkeyman's teeth has been so bad!! I used to feel so so bad about it. As his mommy, I was responsible for his teeth. We always brushed 2-3 times a day, and he never complained about it or fought me on it. But still, I felt bad. Other people's comments on why children's teeth goes bad, didn't help much, of course.
Third sign was grannulation in the far back of the throat. It's not due to illness, it's due to a longstanding irritation like mouth breathing.
The dr also comment on the fact that his tonsils were very small, and not infected/irritated at all, and not obstructing breathing. So he was sure the adenoids were the culprit. He sent him off for an x-ray of the facial profile, and showed us afterwards. It was very, very clear. Most of the airway between his mouth and nose, is blocked by swollen adenoids. He said if it was blocked less than 50%, they take a chance on steroid medication to reduce the size, but in Monkeyman's case it's too big. So it has to be removed surgically.
We'll do that in about a week's time. Then, he said we need to wait 8 weeks for recovery, before going back to the cardiologist. If the heart eccho (sonar) shows improvement in the pulmonary hypertension, Monkeyman was one of the lucky ones and we can put this whole ordeal behind us. I think?! Because it would mean the adenoids caused sleep apnea, and the sleep apnea caused the mild pulmonary hypertension. For now, I'm going to try and not think about the "If not..." that's left unspoken. If we need to, we'll deal with it then.
There's a few strange things that I guess I'll never get answers for. Like, why didn't Monkeyman ever trigger the sleep apnea monitor? He slept on it for more than 2 years, and it's supposed to pick up apnea episodes of 15 seconds and longer. Maybe his was only about 10 seconds or so? But why would that cause such bad oxygen saturation that it caused pulmonary hypertension? Or was his pulmonary arteries compromised from the beginning? Like a weak spot that got damaged easier than normal?
Also, why didn't he ever really snore? Only when he's ill and his nose is stuffy, do I hear him snore. I don't go to bed with my children. I check on them/hear them numerous times over about a 3 hour period after they went to bed, before I do. More than enough time to know if they're snorers or not! Also, I wake up numerous times a night. I always hear my daughter snore, so if Monkeyman was a snorer, I think I would've heard him. Or if he struggled to catch his breath during his sleep.
And when did this start? His tiredness started before his first birthday. When he was still just a crawling baby, I was already complaining to friends and family that there was something wrong with this baby. The way he was physically too tired to play for long stretches. When he was diagnosed with severe iron deficiency, I thought it was that. But after 3 months of supplementation, it hadn't improved and was as much part of his personality as anything.
Why didn't the pead mention sleep apnea as a possible cause when I took him to her age 2 because of his tiredness? Maybe the pulmonary hypertension could've been prevented. :-(
I wonder what DOES cause his tiredness? Is it the lack of enough sleep? Is it the heart that works so very hard? Or is it the lack of enough oxygen at night? Or maybe a bit of each? Or different reasons at different stages in his life? So many questions, and no answers.
The ENT is going to draw blood during the operation, to tests for allergies, and do a repeat full blood count and iron test. So nice of him to not put Monkeyman through unnecessary pain! I guess the allergy tests is because we're a very allergic family, as well as because it could be the cause of the swollen adenoids. Because then of course, that cause needs to be treated.
Isn't this "funny". Allergy causing adenoids to swell, that causes sleep apnea, that causes pulmonay hypertension. My son's heart is enlarged, possibly all due to a silly allergy?!?! And he's my least allergic child!
Well, I'll be sure to update once his adenoids are taken out. Wish us luck! It's never easy to put your child through anaesthesia, doesn't matter how quick and easy the surgery apparently is. I just hope he won't be in too much pain, poor little boy.
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